It started Monday evening. AJ finished his therapy at 7, and he felt a little warm. I took his temp. It was 101.something. Not terribly impressive to a mom who has seen 104.something more times than I can count, but definitely too high. Tuesday is cancelled; no school, no therapy.
Tuesday he continues to have a fever off and on. It's strange how he can go for hours with a normal temp and nearly normal behavior, but then suddenly he'll curl up in a chair, and our ear thermometer will say 101 or even 102.something. He has a dose of Motrin to take the fever and achiness away to help him sleep at night, and generally at least once during the day.
Wednesday is another day off for him. See, both our therapy team and school have the same fever rule - he must be fever free (and not as a result of medication) for 24 hours before he can return to his routine. Wednesday I keep him Motrin-ed up and he's pretty happy and healthy all day long, but in the afternoon I let the Motrin wear off to see what will happen, and sure enough, that evening he curls up in a chair, looking miserable. 101.something.
Thursday morning we go straight in to see a pediatrician. I begin by explaining the Fragile X and autism, the fact that he's nonverbal and somewhat resistant to pain. We've seen this doctor before, I think she might remember us! She checks his ears and throat and sees nothing out of the ordinary. She listens to his lungs and says he sounds a little "gunky" and she'd like him to have an x-ray. Oh boy!
But it actually goes pretty well. I wear an apron, he wears a waist-apron, I hold him still and they get a front and side view, no problem. The lab lady also comes in to get a blood sample, which is the most painful thing we ever do -- while she squeezes drop after drop out of his finger, I allow him to chew my arm raw.
After a few minutes the doctor comes back in and says she'd like to feel his tummy. I get him to lay down on the table and she pushes and squishes his tummy around while he giggles. Then she says he can sit up.
She says the x-ray showed a little bit of something in the lungs, not much, and she might not normally prescribe anything for it but since he's on his 4th day of a fever, he should take an antibiotic. But the lungs weren't the most interesting part of the x-ray. His liver is oddly shaped, apparently. The x-ray went well down into his abdomen and she showed me how a normal liver should be shaped (blob-roundish), and how AJ's is shaped (long). She said the size seemed fine, she didn't think it seemed enlarged, it just isn't sitting where she would have expected to se it.
My first thought was, let's x-ray the other one -- I want to see if his twin brother has one like it.....
My second thought was, well, it's certainly not the first thing about them that's not like other kids.....
She's going to send it to a radiologist and get his opinion on whether it's anything to look into further. She doesn't think there's anything wrong with it necessarily, she didn't feel anything abnormal in his belly, so I shouldn't worry. Right! Thanks!
Have to go now, my little one is whiney. So much for the last week of school being my time off to relax before summer begins.
Connecting, 30 years later.
2 days ago